There is an area of health care that the general public in England does not know much about and that our politicians would prefer to keep that way. Its only when you have a relative with a serious long term health condition that you discover the complex, unfair and inhumane system that you have to go through to get NHS funding for the care your loved one needs.

Since the 1980s, in England, there has been a relentless redefinition of much of nursing care as “personal care” to increasingly transfer costs from the NHS to individuals. People with care needs arising from serious long term illness or disability are assessed for eligibility for NHS Continuing Healthcare. If found to be ineligible their care costs become the responsibility of the local authority for which means tested charges apply.

Here is an email I received describing how it feels to be subjected to this process:

Yesterday I attended a meeting with an NHS assessment person to see if the NHS would contribute to my 92 year old father’s fees for his nursing home. She produced pages of a tick box score system which goes to a local panel for them to decide if they would provide funding.

It was quite clear from the scoring method that the answers are weighted to ensure the NHS gets away with paying nothing. For example, my father is doubly incontinent, bed ridden and virtually unable to do anything for him self. On that page the score was ‘moderate’ as it was for most other pages, as there is a higher level of illness for the classification of ‘severe’ which means you have to be just about at deaths door!!

This has come about due to a “fault line” at the origins of the welfare state distinguishing between health and social care. Originally intended to be for things like housework, meal preparation and laundry, social care has been redefined under successive governments to include personal “hands on” care that people with long term health conditions or disabilities require, including those with severe, complex and enduring health problems.

As budget cuts bite both the NHS and local authorities are desperate to offload responsibility for paying. NHS commissioners are raising the bar ever higher, making it very difficult for even those with complex and serious needs to receive NHS funding. Local authorities have diminishing budgets and are also raising their eligibility thresholds for support. Thousands of people are finding they have to pay for care that would once have been provided by the NHS.

It undermines one of the most important founding principles of the NHS- that health care should be free at point of use. It is clearly a system that is extremely stressful, undignified, time consuming, uncertain and unfair – in short, inhumane – for people and families who, by definition, are already suffering from the impact of serious long term illness and disability. This BBC programme explores the issues well and gives some moving examples of the human impact.

The NHS Continuing Healthcare eligibility assessment is so problematic because it’s an attempt at an artificial distinction between health and social care that does not make sense in the real world. That’s why there are so many inconsistencies – for example people with cancer are more likely to be found to be eligible for NHS Continuing Healthcare than people with advanced Alzheimer’s even though their care needs may be the same. Eligibility criteria are applied very differently around the country leading to a postcode lottery.

The Government pretends all will be well because there’s a new fund called the Better Care fund to improve adult social care. But this could have the opposite effect. It’s not new money. £3.8billion will be transferred from the NHS to local authorities. Each CCG will lose millions and have even less money to pay for NHS continuing care and even more incentive to try to shift people off their books. Local authorities are already cash strapped having suffered 20% real terms cuts in past five years. The likelihood is that Better Care money will be used to prop up existing services. The Better Care fund won’t stop the unseemly pass-the-parcel between NHS and local authorities where both argue why a patient is NOT their responsibility.

The rhetoric from politicians of all three main parties, that “integrating” health and social care budgets will solve the problem, is superficial and misses the point. They say they want joined up health and social care but the truth is they want it to remain divided, where it matters most, over the body of the person needing care.

Unless we tackle the unfairness of charging for personal care we won’t remove the incentive to try to pass health care costs from the state to the individual. People will still have to go through the dreadful eligibility assessments and the prospect of charges of thousands of pounds. The main political parties are silent on the issue of charging for personal care, for all their chatter about “integrating” budgets. But merging of budgets without dealing with that issue could lead to further blurring of distinctions and erosion of the principle of free health care by making it even easier to relabel health as social care.

Free personal care was the recommendation of the 1999 Royal Commission on long term care for the elderly, which the then Labour government in England rejected, but which was implemented by the Scottish Labour government in 2002. This continues to be the case in Scotland today, and to a lesser extent in Wales and Northern Ireland. The National Health Action Party calls for free personal care across the UK. It could be funded through a combination of general taxation and wealth taxes, with billions potentially available from dealing properly with tax avoidance.

Illness and disability could happen to any of us and will happen to many of us. We all think the NHS should be there for us when we need it most. The NHA Party believes that the costs of personal care are simply what a civilised society should be prepared to pay to enable our elderly, sick and disabled to live as well as possible.

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